Month: September 2015

When you’re experiencing a severe brain-fog and your Physiotherapist sticks a memo on the back of your phone to remind you to do things because you can’t remember anything for nuts.

Yesterday’s brain-fog was by far one of the most disorienting brain-fogs I’ve had this year. Maybe the haze is taking it a new level altogether. I lost clarity of things around me, I couldn’t think, my eyes were tired, I couldn’t type properly, I was walking like I might fall any minute, I was talking with words all jumbled up, and, I couldn’t remember what I did during Pilates the day before.

My Physiotherapist asked me if the things I might forget while I experience a brain-fog come back to me when the fog clears up. Yes, at least for me, I start to remember everything as the fog clears up. Sometimes this may take a few hours and sometimes, a few days. Things start to get clearer slowly but the exhaustion from the braindead-ness takes quite long to settle.

I’m feeling a little bit better today – less clouding of thoughts for sure and my eyes are able to focus better. Now, before I lose track of everything again, it’s time to stop looking at the phone screen.

Back to a little bit of work :) Sketched out a few ideas for the cover of One Day At A Time. It’s going to be made out of Faux leather and the very first copies will either be #White, #Magenta or #Teal. That’s right, it has to be one of the #Manntra colours!
💖

Have you people caught yourself aimlessly flipping through Facebook on your phone as if that application has some magical power over you which you just can’t escape ?

It’s very unlike me, but I caught myself doing that today and I knew it was time for a break. I sensed a hint of distraction strategy. What I probably need right now is a walk by the beach instead. The thing is, I don’t enjoy doing anything that captures my brain in such a way that I lose control over it myself. I’m learning to let go more these days but the last thing I’d like to let go of is the control I have over my mind. Today when I caught myself scrolling through Facebook with my brain absolutely dead, it didn’t seem right anymore. I’m going through a great deal of change at the moment and I do not want to be distracted from the feelings and emotions associated with this change. I want to feel every bit of it only so that I’m able to figure things out and rise above these emotions.

I’ve just started to build my routine all over again and I don’t need Facebook to be a part of it. It never was anyway and it doesn’t belong in there. If I’m sitting there without any reason, “checking out” stuff on Facebook, then I know that’s exactly what I don’t need.

It’s time to really focus on being present and putting effort into things that will help me feel better; and week off Facebook sounds awesome! Besides, I’m just not a fan of Facebook.

September 18, 2014 was a major turning point in my life. I was on my way from school and a lorry hit my cab from the back, causing all the joints in my body to literally rattle and weaken. I experienced a quite an intense whiplash; with my neck and spine feeling the most amount of stress. Just few weeks earlier, someone at school had bumped right into my left shoulder, causing it to move out of position once again. I was barely healing from that injury when this accident happened. My left arm was in a sling and just as I settled in the cab on a long ride back home, I opened my sling up to give my shoulder a little rest when within seconds there was a loud bang and I thought that was it.

It took me a few seconds to actually register that a lorry hit my cab and a few seconds more than that to notice that my body was in shock.

The impact of the whiplash was so great that I couldn’t move one bit. I still remember how the traffic police just peeked into the cab, looked at me and got us to move to one side of the road and rode away on her motorbike. She didn’t think it was necessary to ask me if I was okay, and I assume it was because I looked completely alright! There was no blood, no visible injury for anyone to think that I was in severe pain – but I was. At that moment, I thanked my stars for being alive. It could have looked a lot worse but I was alive. I was in immense pain, but I was alive. I was breathing. I had no strength left in me to even make my way out of the cab in order to take down the details of the lorry etc.

That accident led me to make some even greater changes to my lifestyle. I was at the brink of having a major burnout and I didn’t want to fall into the dark pit of pure despair once again like I did around the time of my diagnosis. I had been working and pushing myself through life as if I was born with a fit and normal body, taking on too much and practically functioning on an empty tank. I was comparing myself to those around me who were blessed with a body that allowed them to continue to work according to their plans, pursue their passion and hobbies and I was only causing myself too much suffering. There were people around me who expected much more out of me and I was one of them too. It was this accident that made me see my reality, and for once stand up and make that tough but highly necessary call. It was time to prfioritize my health, my dear body, over anyone or anything else.

For months before September 18, 2014, I was hanging by the edge of the cliff, unable to take that leap of faith, which was required in order for my situation to really change. I feared screwing up and I doubted I could survive the consequences of those decisions. I was worried-sick, even though I knew I had to hold myself together and take that leap. I was suffering every single day, caught between what I should do versus what I need to do and want to do, and was experiencing terrible amount of fatigue and pain. I didn’t have it in me to close my eyes and trust that I knew what was right for my body. My personal expectations and those of others tied me down too much and kept me from giving myself what I needed at that point in time. Seeing that the life of those around me was far too different from mine used to make me feel as if I was at fault or as if I didn’t do enough and that wasn’t true at all. How my life has panned out wasn’t my fault. I didn’t consciously choose this situation and neither did I choose these circumstances to be born around or with. These were the cards I was dealt with and it was up to me now to stand in my own power and play them in a way that’s true to who I am and my condition. This wasn’t a race against time or people. This was simply something I had to learn to work around.

It was also around this time that I understood that different doesn’t mean bad. It just means different. Sometimes different is good. Sometimes different is even better.

This accident finally made me realize that I had to stop. I had to pause and breathe before anything. I hadn’t given myself that permission to just take it slow because I was constantly thinking about my past goals or about not disappointing people. For months before the accident, I couldn’t gather the courage I needed in order to finally let myself rest. To say enough is enough and realize that it doesn’t matter what people say or feel, even if they’re our loved ones, because no one really knows what’s happening to us or our story as well as we do.

This accident FORCED me to STOP. It forced me to question my priorities. Was I my own priority or had I been giving priority to everyone else and everything else?

It was this accident which once again proved to me that not everything is in my control. I was looking after my body well, making sure I did what was needed for it to function, and did what I could to be more aware of my surroundings in order to not make any “mistakes” and hurt myself… AND guess what? This accident still happened. No matter how much we try to do things a particular way (often times we refer to it as doing things “right”), there will always be incidents that are totally beyond our control, and this accident was one of them. More often than not, these things happen because they’re meant to make us think. To force us to jump out of our comfort zone, or make that difficult decision, or simply to teach us something we are yet to learn.

It took me months to feel a slight amount of relief from the impact of the accident. Till then, I was popping an obscene amount of medicines to get me through the day and look and feel normal. Dealing with the post-accident stress was another story of its own. My skin was covered with a faint rash, which took a long time to disappear, and I was waking up at night dreaming of being hit and falling apart. At times, getting onto a Silvercab makes my body cringe a little, and I can’t help but be reminded of the accident and the effect it had on me.

Today, one year later, though there are still a few question marks in my life and there is a fair amount of instability and uncertainty associated with this condition and its consequences, I am so happy that I took those big steps forward. In some ways, this accident really helped me pick out what I needed to focus on. I chose to do things that felt right to me, even though I didn’t have a clue about whether or not they would actually turn out to be the “right” decisions ultimately. The thing is, I am now fully convinced that any decision made in favor or who I am at the very core of my being, and what my body truly needs for a condition that I’m born with, has to be right; or at least must be one step closer in the right direction. In fact, what is right for us today may look different tomorrow, depending on where we are our life anyway. Who says we can’t change our mind later? We might not be able to go back to that exact time, but we can most certainly learn to adapt and make better decisions as we move forward. Today, I’m putting together a lifestyle that serves my present state and figuring it all out one day at a time. Some goals and dreams look significantly different from what I once thought I’d want, while some continue to stay strong. It surely requires a lot of patience when you have to rediscover all the possibilities while dealing with limitations so very real.

My health has brought me closer to myself.

I’m relieved to finally have been able to write so much much about September 18, 2014. I barely spoke about it with anyone, so writing a blog post about it is a big deal.

One. Because I’m mentally and physically so tired from my recent move and I’m just all over the place right now and would need time to settle in, be at peace, bring myself together and be able to write anything.

Two. I bumped my left shoulder into the main gate of my friend’s apartment and that has caused an impact so bad that the pain is shooting up into my neck and down into my shoulder blade and the whole arm, including the last two fingers. It feels heavy and I can barely use it. No, a slight bump into a gate should NOT be causing so much pain to anyone.

Three. My left neck is sprained and no one knows why or how. Is it possible to just be walking down an aisle in a grocery store with nothing in your hands, and suddenly sprain your neck without any quick movements or jerks? Technically no. But yes. That’s what happened and within seconds, all the surrounding muscles turned rock solid. It was no where close to normal. I can’t look to my right without experiencing an intensely sharp pull on the left side of my neck; probably from the bottom of my head, around my ear, all the way down into my collar bone.

Hello, EDS!

With that, there isn’t much I’m able to do. Any form of slight movement on the left hurts me a lot. I had acupuncture today and unfortunately, she wasn’t able to release the tight muscles or get rid of that intense pain. I’ll see how I feel over the day. Sometime such treatments take a few hours to show effect.

I’m so fatigued and drained out. Last few weeks have been very challenging.

Well, at least I’m in my new place now and had already managed to move everything over before this happened!

Happy to be slowly getting back to #Pilates after two months of doing no physical activity whatsoever and allowing my back to #rest.
The latest #disc injury, on top of the existing disc bulge has been harder to manage and has me made me re-design my entire #pain #management plan all over again.

It’s not been easy at all, but it’s been yet another phase of #learning to do what’s right for my #body in this moment and #accepting it for what it is along the way.
#HMS #EDS #Hypermobility #Syndrome #personal #experience #patience #strength #slowandsteady #chronic #illness #exhaustion #mytapestory